Welcome to Torrey R. Amster’s Foundation

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Support Group

The Craniopharyngioma Online Support Group was founded in 1996 and currently consists of over 400 craniopharyngioma patients, caregivers and medical professionals.

Anyone who falls in these categories is welcome to join. Due to similarities in treatment and outcome, patients with Rathke’s Cleft Cysts are also welcome.

Group communication is by a private email list hosted by T.H.E. Brain Trust, a 501(c)(3) nonprofit organization.


Funding for care and after care of Craniopharyngioma patients

Torrey R. Amster

To Remember Always

Synonyms: Craniopharyngeal duct tumor; Rathke's pouch tumor; pituitary adamantinoma (old term)

A craniopharyngioma is a benign tumor that develops near the pituitary gland (a small endocrine gland at the base of the brain.) This tumor most commonly affects children between 5 and 10 years of age.

Craniopharyngioma causes symptoms in three different ways:

- By increasing the pressure on the brain (intracranial pressure)

- By disrupting the function of the pituitary gland

- By damaging the optic nerve

The increased pressure on the brain causes headache, nausea, vomiting (especially in the morning), and difficulty with balance. Damage to the pituitary gland causes hormone imbalances that can lead to excessive thirst and urination (diabetes insipidus) and stunted growth. When the optic nerve is damaged by the tumor, vision problems develop. These defects are often permanent and may be worse after surgery to remove the tumor.